Author Topic: Some questions about GK versus CK answered  (Read 8835 times)

leapyrtwins

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Re: Some questions about GK versus CK answered
« Reply #15 on: May 03, 2008, 04:22:14 pm »
Mary -

I'm sorry to hear you are sad and I share your sorrow  :(  You have no control over this situation, so try not to let it get to you too much.

I'm glad you're a good candidate for the BAHA - and don't forget about the TransEar - there are lots of us here who have one or the other and we can (and will) definitely give you our two cents worth about your options - when you are ready.  But first things, first.

I'm hoping that Dr Kresl will have something good to tell you on Monday - from what I've read about him on this forum, he sounds like a great doctor. 

Wishing you the best,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

MaryBKAriz

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Re: Some questions about GK versus CK answered
« Reply #16 on: May 03, 2008, 04:51:13 pm »
HUGS to you, Jan!!!! :)

Somehow just writing these things to people who understand makes me feel better, especially when someone gets back to me as fast as you did!!!

I will look into Transear, also. Thank you for the info. Somehow I didn't know they weren't one in the same. I was so certain my hearing would be salvagable. DUH...dumb assumption on my part. My optimism usually serves me well.  ;)

Thanks for being there...off to look at the transear info on this sight.

Mary


Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

leapyrtwins

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Re: Some questions about GK versus CK answered
« Reply #17 on: May 03, 2008, 04:55:29 pm »
Mary -

when I hear TransEar, I automatically think of Boppie.

I know she is very happy with hers.  She might be a great resource for you.

Thanks for the hug.  Right back at ya   ;)

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

sgerrard

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Re: Some questions about GK versus CK answered
« Reply #18 on: May 03, 2008, 09:08:43 pm »
Hi Mary,

Dang! These ANs are sneaky little things, and can snatch away hearing in a matter of months. Given how fast yours has been declining, it is likely that even with earlier radiation treatment, you would still have lost it. Radiation doesn't take effect immediately, or slam on the brakes, and for several months after, whatever damage was occurring can continue to occur. I was informed about this regarding my own hearing, which might well have gone entirely after treatment - and may yet do so in the future. My hearing is closer to 50%, and though I get some distortion with a hearing aid, it is still serviceable and helpful. I'm lucky for now, I guess. You can still do CK or GK; with CK, they may want to do a single dose, like they do with GK, since the hearing is moot now - or is that mute?

On the bright side, you may have a BAHA in your future. By the time you need it, Jan and Lori and I will have converted Lori's garage into a BAHA accessory kit assembly shop. They are going to be the next Internet shopping hit. You get cake string, and Dawn dishwashing liquid, and a torque wrench, and all sorts of goodies. Having a snap on post mounted in your head is the coolest thing. If I go deaf in my left ear, I will be signing up for one straight away. I am already practicing the phrase "Excuse me, let me snap this device to my head first, then could you repeat that?" I can hardly wait... 8)

When I was down at Stanford, I met a woman who has been deaf in one ear for 15 years now - a sudden overnight deafness, attributed vaguely to a viral infection, since no specific cause was ever found. She does just fine, and functions quite normally. Of course she misses stereo hearing, but it seemed like more of an inconvenience than anything else for her.

Oh well,

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

leapyrtwins

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Re: Some questions about GK versus CK answered
« Reply #19 on: May 03, 2008, 10:27:50 pm »

On the bright side, you may have a BAHA in your future. By the time you need it, Jan and Lori and I will have converted Lori's garage into a BAHA accessory kit assembly shop.


Does this mean we're going to have to cut you in on our profits  ???

I guess that's alright with me, but I'm not sure Lori will go for it.  She's pretty tough  ;)

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

MaryBKAriz

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Re: Some questions about GK versus CK answered
« Reply #20 on: May 05, 2008, 09:14:33 pm »
This was a good day. It is Dr. Kresl with the CyberKnife in Barrow Neurological Institute. Or was it Colonel Mustard with the candlestick in the library??? Back to the Clue reference.  ;D

Now just waiting for insurance, and I will be waiting for the big date to be revealed. I feel such relief! I am actually somewhat excited. WEIRD!

Thank you all for being here.

Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

Mark

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Re: Some questions about GK versus CK answered
« Reply #21 on: May 05, 2008, 09:25:21 pm »
MaryBK

Glad you were comfortable with Dr. Kresl and congrats on your decision. hard part's over  ;D

I am curious if you passed on Dr. Medbery's comment and what he said in response  :o

See Dr. Kresl at Barrows, and tell him I am watching him.

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center


Best,

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

leapyrtwins

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Re: Some questions about GK versus CK answered
« Reply #22 on: May 05, 2008, 09:28:55 pm »
Congratulations, Mary!  It can be such a relief to make your treatment decision.

Once you have a date, don't forget to put it on the AN Calendar  :)

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

MaryBKAriz

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Re: Some questions about GK versus CK answered
« Reply #23 on: May 05, 2008, 09:31:25 pm »
Mark,

I KNEW I forgot to tell you something! I DID tell him and he laughed, he seemed to love it! I just told him what Dr. Medbery said and he commented, "Oh, Clinton Medbery." He truly seemed pleased. It also was a fun thing to do during such a serious discussion. Thanks for reminding me.  :)

Have a good evening.

Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

MaryBKAriz

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Re: Some questions about GK versus CK answered
« Reply #24 on: May 05, 2008, 09:32:40 pm »
Thank you, Jan.....you should be head cheerleader. I really appreciate your comments.

Take care,

Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

leapyrtwins

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Re: Some questions about GK versus CK answered
« Reply #25 on: May 05, 2008, 10:24:57 pm »
Thank you, Mary. 

I think head cheerleaders have to be blonde, though - it's kind of like a requirement or something  ;D

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

MaryBKAriz

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Re: Some questions about GK versus CK answered
« Reply #26 on: May 05, 2008, 10:39:09 pm »
Maybe you have very, very, very, very dark blonde hair :D
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

sgerrard

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Re: Some questions about GK versus CK answered
« Reply #27 on: May 05, 2008, 11:39:32 pm »

I think head cheerleaders have to be blonde, though - it's kind of like a requirement or something  ;D


Blonde, or they can have a mounting post screwed into their head, which makes them cool enough even if they aren't blonde.  8)

"Oh, Clinton Medbery." The thing is, we need to know the tone in which that was said. Was it like "Oh, that sounds like Clinton Medbery", or more like "Oh my goodness, the Clinton Medbery?"

Mary, congratulations on the decision, and as Mark said, the hard part is over, and it is a big relief. And I think it is exciting, too, that doesn't seem so weird to me. It is not everyday that you get to have some high tech instrument hover over you and shoot rays into your head. Bones would understand.  ;)

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

MaryBKAriz

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Re: Some questions about GK versus CK answered
« Reply #28 on: May 06, 2008, 10:10:44 am »
Steve I like your answer better - a post screwed in the head. That way a blonde wig can be securely fastened!

Hmmmm.....Dr. Kresl's response to Dr. Medbery saying he would be watching him......He had as I reflect on it a mischieveous twinkle in his (BLUE) eyes as he laughed. He kinda cocked his head back and said ...."ah, Clinton Medbery!" He went on to say something about knowing him...I don't remember exactly what, but I do know I was glad I brought it up. I could tell he was a little taken back having this women he just met not 5 minutes earlier say Medbery's name. I expected to say it toward the end of our appointment but timing was such it came out at the beginning so I think it broke MY tension. Dr. Kresl is a warm person. Really human.

Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK